Doctors have been working on a cure for 50 years, and now, researchers may have found three new ways to give these patients some relief.
Debbie and Mitch Humphreys are no strangers to the hospital cafeteria. She's spent most of her life in and out of doctor's offices.
"I first learned about it when I was 16," Debbie told Ivanhoe.
Debbie has HAE, Hereditary Angioedema, a potentially fatal genetic swelling disorder.
"Both my feet have swollen up, both my hands and my stomach and my throat. It's like a forest fire. It jumps around to all different parts of my body," Debbie described.
"It's like a Playtex glove, you blow it up," Mitch explained.
HAE attacks the hands, feet, arms and legs, but the more dangerous attacks happen in the throat and abdomen. It's caused by a defect in the protein that controls inflammation.
"Sometimes, the attacks are totally unpredictable, so patients don't know when they're going to occur. In some patients, it is absolutely life threatening," Marc Riedl, M.D., Assistant Professor of Medicine and Section Head, Clinical Immunology and Allergy at UCLA David Geffen School of Medicine in Los Angeles, CA.
Traditional therapy was limited to steroids, until new clinical trials began to stop attacks in their tracks.
"Both of these drugs, the protein concentrates and the kalicrohn inhibitor, work by stopping the pathway in the body that leads to the tissue swelling," Dr. Riedl said.
Recently, three new drugs were FDA approved: some reduce the frequency and severity of HAE attacks by more than 50 percent.
"Patients no longer have to live with the fear that they could actually die from this condition," Dr. Riedl added. "It stops the damaging effect it's having on her body," Mitch said.
And allows this couple to move their meals outside of the hospital.
The new drugs approved are Cinryze and Berinert, both given intravenously. The drug Kalbitor was approved about nine months ago to treat attacks in patients older than 16.
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